Why I Volunteer for Beyond Celiac

By Sophia Kagan

Beyond Celiac has been an important part of my life for 15 years. I was diagnosed with celiac disease when I was only 18 months old and my parents turned to Beyond Celiac for help.  At that time, gluten-free food was hard to come by and the selection not nearly as vast as it is today.  With my parents, I, too, became involved in volunteering, even at my then young age.

In 2008, my family chaired an annual event called Appetite for Awareness.  My life giving back to Beyond Celiac had begun!  Frustrated that my family could no longer safely go out to eat at restaurants, my parents set out to meet with chefs in Philadelphia in hopes they would create safe, gluten-free options at their restaurants.  Almost 50 restaurants got trained through the Beyond Celiac GREAT Kitchens program and took part in the event. A more “normal” life of being able to go out to eat began.

Since that time, I have had my own individual relationship with Beyond Celiac, with Alice Bast, its CEO who has supported me throughout the years and with Nancy Ginter, Director of Administration, who has guided me in my volunteer efforts.

In 2015 and 2016, I blogged for Beyond Celiac in a series, By Sophia, published monthly on its website, where I hopefully helped other teens and newly diagnosed kids through a year of holidays and annual events, such as the start of the school year, on how to safely eat gluten-free at bar-b-ques, holiday parties, birthday parties and navigating school lunches and projects safely.  I also was given a great opportunity to sample and then review new gluten-free products that were coming to market.

Since then, I volunteer whenever there is an opportunity.  I work with Beyond Celiac annually at Children’s Hospital of Philadelphia’s Celiac Education Day, at the Gluten-Free Expo in Oaks, PA, for the Step Beyond Celiac 5K in Philadelphia and at the annual galas each October.

So why do I volunteer? Literally throughout my entire life, Beyond Celiac has supported me and I feel it’s both my pleasure to return the support and my obligation to help those newly diagnosed with celiac disease navigate the world.  I absolutely intend to continue in my efforts as I would hope, if I were just diagnosed and struggling to live life gluten-free, that someone would be there for me as Beyond Celiac has been for my family and for me.